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Friday, December 23, 2016

I can't wait for Boxing Day I say to a friend when she asks me if I am looking forward to Christmas. Don't get me wrong I add, I love going to church on Christmas morning to sing carols and see friends i have met on my Brain Tumour journey.

I love seeing the grins when I give gifts to my family on Christmas Day. I love giggling as we share jokes. I love sitting around a table eating far too much food; then using up our spare coppers to play our Christmas card game...

But this yearI don't have the energy to decorate the house with tinsel and trimmings. Can't be bothered really. All that bending and twisting exhausts me.

When Mr H comes home from work I tell him to close his eyes

Two seconds later I tell him to open them

Tada...The Christmas tree is up I grin...

We giggle at the £2.49 childish, tacky tree which brings Christmas into our home.

In the shops I feel like a pressure cooker with a bobbing lid. Sweat drips off my forehead as I am knocked sideways by present clasping grey haired ladies and pram pushing mummies.

In Tesco I spot two young lads handing out leaflets to people as they clamber onto the escalator to buy more food. They give me their scouts grin as they tell me, we are collecting food for the food bank today.

When we leave the shop Mr H and I push our trolley over to the charity collection point and wait as a lady in front almost completely empties her trolley bursting with tins onto the table. A joyous tingle runs up my spine as we then add our tins, jars of coffee and tea bags to the magically growing collection. It's food for people who don't have enough money to buy even the basics.

At home I hum to myself as I stir cake mixture and roll icing to create cupcake gifts for some of my friends. When I give them they are met with wide smiles and gasps that I have made cakes for them.

I make more for the staff and volunteers in the Green Community Travel Charity. Their help means I can get out to my exercise classes and to meet friends when Mr H is at work...

When I walk into their office for the first time I am met with smiles and Santa hats. These happy people work or freely give their time to help people like me. I hand the cakes to Jenny the office manager with a request. Please save one for Richard my friendly Friday morning driver who takes me to choir every week....

My friends please remember this for Christmas...

I wish all my friends and blog readers a Peaceful Christmas and a Healthy 2017

Wednesday, November 9, 2016

I pick up a pen, press it between my thumb and middle fingers, watch as it slots into place in my hand and black ink flows like blood from my blue and silver pen...

I looked at you when I opened my eyes and gave my first cry. I don't remember seeing you, but you were there, two pink bundles of skin, bones and the teeniest nails. You helped me to eat, clutch my mommy's fingers, gave me something to chew on when my first teeth broke through.

Now as I glance down I see years of hard work etched into the creases from hand washing and caring. You helped me through exam after exam scribbling on paper for hour after hour. You are always there for me...

So in 2008 when I wake up after my second brain operation to see my left fingers curled up like a claw. My arm coiled like a spring up to my chest. I lift you with my right hand and gently place you on a pillow on my bed. I ease each finger out and lie them flat. I whisper I will take care of you now.

Like a baby I teach each finger how to hold a spoon so that I can feed myself cereal while steadying the bowl with my working right hand. We progress to holding a flannel and reach up with the help of a nurse, to wipe my swollen face. I grin as we lift the items off my bedside table one by one, laugh when the nurse asks why so my left hand can put them all back again I tell her. I work you hard, we work together to get you moving again. Gripping a zimmer frame was our biggest challenge when I was re-learning to walk. But together we did it. Together my hands and I can overcome anything.

So today as words do a merry go round in my mind I once again turn to you, my precious hands. With all your wrinkles, dry skin and nails I am trying not to nibble; you help me to write out my thoughts. And my mind slows as unhelpful words float by on a cloud...

Tuesday, October 4, 2016

I can’t believe we are here I say to Mr H with a
grin. A whole week, we won’t need to use the car.

We stroll hand in hand along the narrow, cottage filled lane
to the sea front. I stop as Mr H clicks his camera to capture my ever widening
smile.

I breathe in slowly as I fill my lungs with the salty air. My shoulders
drop as the ozone fills my nose. I stare and listen to the swooshing tide as it
spreads onto the beach before being pulled back into the sea, washing away some of
my anxiety. The sky may be grey but my heart is full of sunshine.

I hope that this break will settle my head. Stop the
electrical storms which have kept me at home, too scared to go out on my own.

This change in behaviour started a few weeks ago…

In Tesco I shout out Whooooh as a huge wave crashes through my head knocking me sideways. I stumble and grab a tin filled shelf.

Can I help a lady asks, so I send her into the next aisle to
find my Peri Peri sauce hunting husband. I breathe a sigh of relief when he rounds
the corner. I slide myself down onto the floor. Tesco staff come to help. First
aider arrives. They bring a wheelchair and take me out while Mr H pays.

A one off. I hope.

Then last Saturday it happens again…

I am alone, walking past Boots in the mall and Whoooh breaks
through my lips. I lurch to the side. A man standing there sees, looks, then
walks away. I try to walk again but the waves stop me and I slide
myself once more to the floor. My legs cannot hold me up. I need to sit I
whisper to no one.

I call out to two ladies can you help me
please?

Epilepsy.

They stay with me and I book a Taxi home, quicker than
ringing Mr H. When I can stand, these lovely hen party planners walk with me and wait until it
arrives.

Two days later I step out of the front door, wrapped up to
guard me from the autumnal breeze. I
pass cottages, the club house, but by the bungalows a wave crashes inside my head. I wobble against someone’s dry stone wall. I lower myself down at the bottom
of their drive. Almost in the lane. But not quite. Please stop someone I
whisper to myself as cars pass by…

Eight years ago, when I was alone in my hospital room, unable
to walk after my surgery I promised myself this…

Wednesday, August 24, 2016

Sue and I grin as we arrive at Mesmerize Me in BirminghamThis is it she says, Excited?I have been treated to a make over day with my friend, Sue's sister Jacquie bought it for her for Christmas and told her: go with Dawn you will have a great timeOur pale, make up free faces stand out against the black sofa we are asked to sit on as we sip a cup of coffee. Phase one Selfie Sue says as we grin into her camera...We glance at the forms we need to fill in.Mmmm which feature do you want enhanced in the photos I mutter as I glance at Sue, dimples for me, eyes maybe, for you she suggestsWhich feature do you most want to disguise...wrinkles we giggle But I bow my head and instead scribble I don't want to look disabled. Upstairs our faces are transformed from pasty pale to palettes of colour. Our eyes and cheeks are defined as the beauticians apply more make up than I have ever worn! We use theatrical make up they tell us, you will need it in the bright studio. They tease our hair into bouffant styles. Very Mary Quant I say to Sue when her rollers come out!Back on the sofa we take phase two photos...

When it is our turn we wheel our suitcases into the studio. Lets look at your outfits first Laura the bubbly photographer suggests with her camera hanging around her neck...

She asks me what my limitations are...

Try me with everything, I don't want my stick to get a peep at your camera lens I mutter as I abandon it in the corner of the room.

She suggests we sit on the floor and clicks away as we pose, first on our front, after waiting for my left leg and foot to register what I want it to do. We laugh as I try to hang onto the position long enough for a good shot...

You look fantastic she smiles as we kneel...

Do you think you can get into this holenext Laura asks me with a grin.I'll give anything a go...I hoist my bum into position.Now slide down, let the curve do the work she tells me as Sue watches, her grin getting wider with each shuffle..Oh my goodness thats amazing they both say as the camera clicks...

Wednesday, July 13, 2016

When I was young the last thing on my mind was to sit down with my parents, aunties, Grandparents and ask them to tell me about their lives. In my late teens I often stayed with my Nan on my time off from nursing and we giggled our way through the days. Grandad and I had our love of books, birdwatching and nature to keep us talking for hours over a cup of tea in a china tea cup.We would walk to the shops or library together like the best of pals. Me on the inside of the pavement as he protected me from the road, his brown shopping bag swinging on his arm. But I never once asked him or Nan about the Adult School. It was their homes I took myself to when I lay in my hospital bed in 2008, distressed in the darkness, unable to move. I walked my memory through each room recalling the chairs - chairs I now sit on at home, the glass clown by the fire at Nans, the bird paintings at Grandads - paintings which now hang on my walls. I rarely got upstairs as I was always asleep before I reached the bottom rung of the stairs.Last year it was my late Grandad who silently took me by the hand and led me into the Adult School research I am currently doing. He wanted the story to be told. He wanted me to tell the story.The interviews I am undertaking with many silver haired ladies and gents make my heart sing out as I see their smiles, their joy in sharing happy memories with someone who is interested in what they have to say. But in my quest for stories, all too frequently I hear:I wish I had asked my Mum...I wish we had sat down and talked....If only I had taken an interest...

So when I sit shoulder to shoulder with my Mum in The Archives and Heritage Dept of the Birmingham Library; we discover letters to and from my Grandad, minutes of meetings written by my great Grandad; notes about my aunt and uncle. I smile when Mum excitedly gasps your Dads name is here I didn't know he was on St Oswalds Camp committee. We find letters, brochures and photos some featuring people I have never known, others were uncles and aunts, Grandads and Grandmas who I never thought to ask...My brain tumour gave me the gift of Time. Time to ask the right questions of octogenarians who want to tell their stories...

The Midland Adult School Youth Committee 1944 - including my Uncle in the backrow

Photograph courtesy of The Midland Adult School Uncatalogued Archives held in Birmingham Library Archives and Heritage. Photographer unknown

Thursday, June 16, 2016

On November 17th 2008 I pulled on my Ronhill tracksters, slid my feet into my blue and white running shoes and jogged away from the house. My last run...When my brain tumour stole my running and walking legs Mr H refused to go back out running.I can't he would say, it is not the same without you.

But eventually I manage to push him out of the door with a smile. I know running is good for him and I happily stand cheering when Mr H achieves his goals of a 10K and half marathonI walk my slow hobbly walk around the village and learn to swim...But over the last year I feel as though I have reached a walking red light. While everyone around me is running... I watch running groups pass the window, listen to friends and family talking about their couch to 5K training, chat on the phone with friends doing the Race for Life. For Me!But my running legs are screaming to get moving, they want a challenge, I want to exercise with people.. I want to feel the buzzI can't walk 5K let alone run I tell the Race for Life organisers as I ask them to consider doing something for people such as me with disabilities due to the cancer...We will look into it they tell me. But then it all goes quiet...My friend Chris suggests I try aquafit at our local Gym so I find a group leader with a sensitive approach to the fact that I have to do my wobbly, slow version of most of her exercises. I find myself grinning and humming the words as I lift my leg to the music while hanging onto the side of the pool.In my search for more alternatives I discover a circuit training class for people with Multiple Sclerosis and Parkinsons disease. I am welcomed into the arms of this laughter filled hard working group. Vicky the leader is as bubbly as the best champagne and ensures each exercise is tailored to each members ability.. We are going to work you hard she tells me with a grin. It feels like I am back in the neurology physiotherapy gym I say when she insists I try to lift my left leg rather than swing it to the side...I am back on the balancing board, stepping slowly up and down off a step, using a resistance band to work my arms and legs so hard they shake...Its back to exercise basics and I am feeling the buzz....

Thursday, May 12, 2016

Oh my goodness I don't believe it, I don't believe it, I say as I look around to see if anyone is watching...I stroke the orange and cream cover. Gently touch the front, run my fingers across the title and name. I check the date, yes 1814 I mutter to myself, Thomas Pole...Last week a black cloud had settled over my happiness. Each morning when I woke, happiness sat in my shoes ready to be stamped on with each step I took. Too many seizures. Too many falls.On Sunday over our cereal bowls Mr H announces you need a day out, a change of scenery, I am taking you to Hay on Wye. On our way we spot a red kite soaring above. I watch its forked tail wavering with the wind and my happiness floats out of my shoes. When we leave the car we mutter uselessly only two books each...In the cinema book shop, always our first stop, I search for books linked to the research I am now undertaking on the Midland Adult School. I run my finger across the index board on the wall; education and religion this way. I cling to the handrail down four rickety wooden steps and pass two rows of wooden, magically musty book shelves; I find education first. As I smile at shelf after shelf of colourful books my breathing slows and my shoulders sink. I dangle my walking stick from my arm as I move along the rows and rows of books. I stop with a doubled heart beat when I spot the words Adult Education! I lift the first book from the shelf .... It belonged to someone called Colin Woods, all the books I slide from their home bear his hand written name. I wonder what he was studying as I start my purchase pile on the floor...

Mr H with his arms full of books, comes to find me. Anything? he asksI nod grinning at the pile on the floor; look at the orange and cream one; I cant believe it. It's a copy of Thomas Poles' original paper on the first Adult Schools which he established in Bristol!

On the drive home the sun shouts its golden glory as it lights up the green Welsh mountains. I grin at the thought of getting my nine well thumbed books safely home to read.

Monday, April 25, 2016

i am frightened of kerbs I tell my friend Helen when we meet for lunch...Yesterday I walked back from the bus stop in a step, leg-lift, head down kind of way to avoid a trip on the rippled pavements...I come to a corner without a dropped kerb, (a lowered section to allow mobility scooters, pushchairs and people like me to cross). I stand and stare at it. Whisper to myself you can do this...I hesitate and gaze at the kerb edge intently. Just step off I say to myself...I shuffle my feet to the edge. The road seems so far away; like I am about to jump off a cliff and crash into the dark wild sea.I stand for a few minutes then turn around and walk back the way I came. Take a running jump at it my inner voice tells me...I walk towards the kerb 'at speed' as I try not to think about the challenge that looms ahead.. But at the kerb my heart drops down to my stomach and I come to a lurching stop. I look up and down the road to check that no one is watching this foot shuffling, hesitant kerb stepper.Then I walk back again...As I head towards the kerb for the third time I try not to think about it, la la la. Just step down it's easy I tell myself as the kerb silently taunts me...But once again my feet come to a halt . I look right and left. No one watching. Then I lower my stick into the road. Lean on it with my frightened right hand and arm. Take a deep breath then launch my left leg into the air. It lands in the road. I pull my right one after it. I am down. Shaking but down. One last furtive glance around and with tears in my eyes I walk the short distance home.On Friday, at my first one to one Pilates session for 18 months, I tell Sue that I am frightened of kerbs. I need help with my balance again I say as fresh tears drip off my nose...Ok let's start at the beginning she says. Do you remember the toy soldier?...

I would then I could pull myself up onto my knees but I
don’t have the room to turn in here. I tap the metal white sides which hold
me prisoner.

Why did I suggest this I weakly grumble as I grab hold of
the taps and try once again to heave my, now almost dry body up…

But I only manage a few inches before my feet once again
slide away from me despite Mr H attempting to hold them still with his glue
like grip…

I don’t know what else to suggest he says as he paces back
and forwards wringing his hands…

Call the fire brigade I say trying hard not to laugh knowing
a spurt of mirth will quickly turn into tears. Can you imagine it we giggle;

dring dring, fire brigade please

I am a naked lady stuck in the bath. I can’t stand to get
out. My legs and arms are floppily fatigued...

What about putting your trainers on?

It’s worth a go I say as, like a fire hose, I spray clean
water around my naked body. Trying to remove any soapy residue to stop my feet from
slithering and slipping like I am trying to stand on an ice skating rink
despite the bath mat…

I huff and puff as I dry my feet and ram my blue and white
trainers on.

Thursday, March 10, 2016

At choir we sing......its a greeeey day, grey day and the sun is shining, greeeey day but the suns gonna shine on everyone and my spirits ease themselves out of the murky mist they have been in for the last few days...But as we walk out of choir, my eyes fill with tears when Julie says well it's the weekend. The one we dread...Oh my goodnessyou get it and I didn't say a word, I exclaim as we pass an understanding hand over each others shouldersThe wave of grief, loss and what might have been, has been building inside my gut for a while. When I stop at the card shop to buy a Mothers day card for my Mum; with love from your daughter, with love from your Son glare back at me. Taunt me. I hate myself for dreading it. I still have a Mum but I walked around yesterday with tears dripping off my nose and sniffed my way home on the bus I tell herBut its' pinkness permeates everything, flower shops are packed with flowers. In Tesco banners and bouquets announce the day. I want to scream what if I am not a Mum what about me. What if. What if. What if...Plans are being made, lunches booked, I book one too for my Mum knowing that no one will ever need to book one for me...Our conversation runs freely once the tap of emotion has been turned on. Maybe we should go abroad for a week we giggle, somewhere where Mothers day is not celebrated. I feel lighter now we are talking about it I say to Julie. We keep up the cover to make it easy for others but inside we are a turmoil of thoughts, sadness, longing Julie adds through tears...on our way back from taking my Mum out on Sunday I breathe a sigh of relief as I say to Mr H well thank goodness its Monday tomorrow. A new week...

A flower bloomed, already wilting, beginning its life with an early ending

Thursday, February 25, 2016

As a child these two little words used to mean the bus conductor couldn't break into my 50p piece. Or the lady in the sweet shop needed to go to the bank. Or my Mum needed to raid the jam jar for my dinner money.Then when I was working they meant a patients blood pressure was the same. Or a relatives loved one was still poorly. Or we were short staffed...But today those two little words bring the sun from behind the clouds. They smear a smile onto my face. And they set me free to walk through the gate to the joyous days and months ahead...

Seven and a bit years after [removal of] this blighter changed my life

Sunday, February 21, 2016

On holiday after a day lying in the sun Mr H ties his bow tie and I choose a cocktail dress from our overfull wardrobe. When we sit down in the bar for our pre dinner sparkling water champagne, I spot a young man snapping photographs around us. It looks like you are having fun I say and after a chat we invite them to join us. In that moment of serendipity we meet two exceptional people...Chris tells us he teaches Makaton: a language programme using signs and symbols to help people to communicateOh I would like to learn I tell him...Can you teach me No Cake I askOf course...take your main hand and hold it up like this

then sweep it to the side, that's No Chris grins

Then cup your hand and place it on top of your other like thisThat's CakeI practice No CakeYou've got it Chris smiles

I keep doing it as I stare at Mr H and he throws his head back and laughs. I explain that I eat too much cake so now Mr H can silently try and stop me!

Chris teaches Makaton at Hallam University, he also teaches some of the Police officers where we live Nicky tells us, Chris is too modest to tell everyone but I am so proud of him...Some people confuse it with British Sign Language (BSL) Nicky tells us as we sip our ice cold drinks, but it is different. More accessible. Simplified. Chris chips in to tell us a tale:About three years ago I was teaching a group of senior nurses when two nursing Professors who were sat in the front row, started talking to each other. I stopped teaching and said excuse me, please listen, I am teaching you...Wow well done, people talking used to drive me mad when I was teaching...What did they say?They stared at the floor. They went red. Embarrassed. How long have you been signing Chris we askMummy started using it when I was a baby and couldn't talk. It helped me to visualise words. She told me stories, signed books for me.I love my Mummy Chris says with a sideward glance at his Mum, She encourages me but she's strict. I tell everyone I am so lucky to have her as my Mummy. She fights so hard for me, she's a lioness. When people stare at me she has taught me to ignore it, so that's what I do. Ignore them.

He has had articles written about himNicky tells us beaming, her eyes twinkling with love and pride. if you tap Chris Sampson Makaton into Google and you will find lots more... famous then I smile. Mr H says Chris you are The King of Makaton!We meet each evening after that, eager to hear more, learn more from Chris and Nicky. One evening, Chris takes his ipod out of his pocket and shows us a video of him signing a rap which he did for a drama group audition; he was immediately accepted they tell us. He shows us a recording of him teaching Occupational Therapy Students at a Conference to sign a song from Glee...

Tuesday, February 9, 2016

A small cappuccino please I askChocolate?A cappuccino without chocolate is no cappuccino at all I sayI agree the dark haired young assistant says as he shakes the bean shaped powder over my frothy white drink.I sit at the only empty table next to two doctors dressed in blue scrub suits, A&E I think, not theatre I hope - too much of an infection risk. As I settle into the hard brown chair and pull out my book they lower their voices and lean towards each other. I stare at the words on the page and try not to listen.Mr H rings my mobile in reply to my text I am hereI am too busy to join you now he says apologetically, hesitatingly.Its OK I tell him, I knew you would be swimming in post holiday work on your first day back. I am as calm as the Caribbean sea, sipping cappuccino and reading. My head is still on the ship I smile.I lift my suntanned face from the pages and watch pale people being pushed in aqua green and white wheelchairs, people walking with crutches, others holding tightly gripped hands. A cleaner mops a patch of floor and leaves her mark, a yellow plastic pyramid warning Caution! I don't belong here any more my mind whispers to no one in particular...I scan my appointment letter and I am back at the airport - Go to Gate 19 and wait the screen tells me. My flight into the MRI scanner is due to take off at 15.00hrs.As I walk towards Gate 18 to catch a lift to 19 a butterfly knot of anxiety starts to tangle tightly below my ribs. I breathe in and out slowly as I wait for my scan. My annual confirmation that I still have an almost tumour free brain.I hope

Monday, January 18, 2016

When I visited the oncology centre for my breast cancer treatment I talked to Rachael, one of the ladies in the information and support centre. We chatted, well I chatted Rachael calmly listened. And listened, to my tearful traumas as they spilled from my trembling lips. I also told her about my blog. On my next visit, when I was sifting through the racks of information leaflets, Rachael caught up with me to tell me how much she was enjoying reading my blog posts...

I love your honesty she told me, do you mind if I tell other patients about it?

Thats what it's there for I told her. On a subsequent she asked me if I would be interested in writing an article for their patients magazine Voice.

Since then I have written three articles for the magazine, sharing my thoughts on Cancer from a patients perspective.

The latest article to be published about Guilt has been bubbling in my heart and head for quite some time and I wanted to share it with you too...

Stomach
churning guilt crept silently up on me after a Meningioma brain tumour shredded
my life. Guilt stopped me asking for
help when depression clouded my world. Guilt forced a smile onto my face when
inside I was weeping.

Why am I
feeling like this I eventually asked a counsellor, two years later? I’m alive.
One of the lucky ones. My brain tumour is low grade. I sobbed.

I feel
guilty when I wish for more information. More support. Guilty for asking for it,

I should be
coping I said.

I have even silently wished my
tumour was malignant so that I could get the support I desperately want. How
terrible is that I ask her with tears
dripping off my cheeks.

You are
experiencing a deep sense of guilt often felt by people
who have survived a traumatic event when others did not – or may not,she
gently said. Yes you are alive but the
tumour has changed everything about your life. Everything.

After that
conversation I joined a support group led by Brain Tumour Support and
was made welcome regardless of my tumour type. And counselling carried me back
to a healthy mind. I just wish I had been offered support at the beginning…

Last year
as the radiology consultant said Dawn you have breast cancer, support and
information were wrapped around me, woven into my care! So no need to feel guilty this time.

But I do.

Guilt has
been following me around. It peeps over my shoulder whenever I think I have
shaken it off.

Why I ask
it?

You should
be organising a fundraising event for brain tumour and cancer research, writing
more articles, doing all the interviews people ask you to do Guilt whispers.

But what
you don’t realise Guilt I grin, is that I have learnt that negative thoughts
are just that …thoughts

So this
time Guilt, I shall acknowledge you then turn my back and walk away…

About Me

Hello welcome to my blog. Before 2008 I enjoyed a 30 year career in nursing but then I was challenged with a brain tumour and almost everything changed...2014 started with a new challenge of breast cancer. - despite these my sense of humour and the ability to support others remain intact! I now take the gift of each day as it comes.